Updated: Apr 26, 2022
Photo Description: Marie stands on a multi-purpose trail in Hawai'i. She is smiling, wearing sunglasses, a blue shirt, and blue shorts. She is holding her cane in her left hand and the mountains are visible in the background.
by Marie Kouthoofd
“Like a lion trapped in a cage, looking out at the world.”
These are the words of a visually impaired para-athlete that I read somewhere, or at least it said something like this. When I read it, Immediately related. It’s all out there in front of me, but I can’t get to it. I can’t even spontaneously run from point A to point B without fear of harm. As my vision deteriorates my world gets smaller, claustrophobic. It’s like being surrounded by a perpetually encroaching chasm or valley. Like standing on the edge of a cliff, while needing to get to the other side.
It takes a lot of energy to switch up the familiar with the unfamiliar but every once in a while I need to feel human again. What does feeling human mean to me? It means trying something new, expanding my world and venturing a little outside of my cage.
The other day, It meant changing up my running route. This sounds simple, but each new variable impacts my concentration and consequently, my safety.
Traffic is always a factor, more so when my familiar running path is shifted to the streets. I am hyper-focused on the sounds of nearby traffic, I’m continually calculating the direction, distance and speed of each motor vehicle. Loud vehicles impair my ability to gauge my surroundings, while hybrids and electric cars are undetectable.
Cyclists add another caveat. I usually don’t hear or see them coming.
Speed bumps are pesky little invisible hazards. Since I have little to no depth perception, they always catch me by surprise. My foot hits, my bones are jarred, my body is jolted, and if I am tired, I can fall.
Potholes, shoulders, imperfections in the pavement, and unpredictable objects in my path are all potential threats. Add traffic in, and my falls can become deadly.
A cognitive map is essential. It is crucial to know where I am and moreover, which direction I’m facing. Anchors are reliable points of reference - kind of like bread crumbs, but immovable.
For example: Because I still have some usable vision, I often use the mountain range as an anchor. The pavement can also give me great feedback. For instance, the new route I’ve taken up is littered with speed bumps. The more rigid, drastically pitched bumps are on Crozier Drive. Crozier Drive runs parallel to the mountains. The longer, smoother speed bumps are on the street that runs perpendicular to the mountains and are to the right of my apartment when the mountains are in front of me.
Once an anchor is set, my mind is free to focus on other variables.
It is also wise for me not to wander off too far initially. Taking time to get to know my surroundings, I set as many anchors as possible, creating and continually enhancing my mental map, then slowly expand its perimeters.
With regard to my latest expedition, the first trial was with my husband. Helping me with my cognitive map, his assistance and support is invaluable.
Having said all this, I’d like to say my solo runs are impeccable, smoothly run pieces of art, but that wouldn’t be the truth. They are hard, clumsy, and sometimes pitiful. While alone, I don’t have the safety net and support of my partner.
This last run, as so many before, took some energy. After a couple wrong turns, I lost my way once or twice. Getting lost can be especially daunting when you can’t see the road’s end.
Running too close to the shoulder, I rolled my ankle, fell in the road, and bloodied my knee. But don’t throw in the towel for me quite yet! I’m so happy I got out there, and I don’t regret one single minute! My injuries were superficial and the short stints of running free and unencumbered bring me joy I can’t articulate. It was truly a beautiful day!
Some days, if not most, go off without a hitch. Other days, not so much.
I’ll never fully recover the freedom I once had but with my cane in hand, I have to keep moving.
I want to protect what precious life I have left, with or without sight. I still have my golden years ahead of me and I’d like to face them with less deterioration than required.
I’ll read or hear of stories about those who were in an accident, maimed or have a debilitating disability, and cringe when that person is portrayed as superhuman. “Not once did they feel sorry for themselves.” they say. “Never did I hear them complain, no not once!” they exclaim.
Well, I’m here to tell you that I complain. I cry, and sometimes I feel sorry for myself. I hate what blindness takes from me. I detest how difficult some simple tasks have become, but it is what it is and life goes on.
As for why I wrote this, I don’t really know – – I guess to share my experience. Perhaps it’s so I can relate to other para-athletes, or maybe to simply celebrate reality.
For whatever reason, it feels good to share and I hope it connects with someone.
If I had one last message to share, it would be to keep moving, no matter your ailment. Cry if you have to, feel sorry for yourself once in a while if that helps, but when that ordeal is done, hold your head high, suck it up. and keep moving. AND don’t forget to smile!
Marie Kouthoofd is a visually impaired para-athlete who has Retinitis Pigmentosa (RP). She is a mother of three, former Licensed Practical Nurse (LPN), and holds a Masters Degree in Psychology with an emphasis on behavioral change. She is also a former instructor who holds a second-degree black belt in Taekwondo after training and competing in the sport for three decades. Her current sport of choice is running. After retiring from teaching for 15 years, Marie and her husband are now semi-retired joint business owners/real estate entrepreneurs who divide their time between Oswego, New York and Waialua, Hawai’i.